After 9/11: Health IT lessons that followed

With the 10th anniversary of 9/11, there have been many personal and political remembrances of the events that scarred families and jarred the country that day. Health IT had its own significant events a decade ago, but they began about a week after 9/11 when letters with Anthrax in them were mailed. What followed was a series of emergency health events some of which, like the largely unsuccessful Smallpox vaccination program, can be traced to 9/11, the wars that followed, and fears of bioterrorism. Other events turned out to be largely unconnected emergencies like Anthrax, SARS, and Katrina but still showed additional emergency preparedness and response health IT requirements.

All of these events demonstrated the need for a broadly interconnected health system that includes many different health-related organizations exchanging critical and processable information. Each event helped make the case for a national health IT network infrastructure that can electronically exchange such information among computer systems from different jurisdictions, health departments, other government agencies, labs, pharmaceutical companies and others - in addition to just provider Electronic Health Records (EHRs).

Each emergency seemed to work to try to reset our sights on that target under the spotlight of immediate attention and then, invariably, after each emergency there was diminishing interest, changing focus, and goals that remained out of reach. As with 9/11 itself, it is helpful to think back to some of the specifics and where they tried to lead us.

Anthrax Attacks and IT
Beginning with the Anthrax events the week after 9/11, it was clear that there was an important need for general health IT infrastructure for emergency health situations. Little was in place at the time of the Anthrax attacks so literally hundreds of thousands of “white powder” test results from State, Centers for Disease Control and Prevention (CDC), and military labs were communicated verbally, through email, or via faxes - if they were shared at all. The State/CDC Laboratory Response Network (LRN) was hugely successful for the lab testing capacity that it provided but it was not much of an electronic “network” at all.

After Anthrax, the CDC endeavored to put HL7 compatible lab exchange capabilities into each participant LRN lab to try to address some of these exchange issues. Although at first it was hard to get funding for full Lab Information Management Systems (LIMS) in public health, most labs now do have LIMS. Unfortunately, because of data sharing politics, the ambiguity of lab result exchange standards and specifications, and the lack of certification for health related computer systems outside of provider EHRs, automated, standards-based lab result exchange in public health labs is still largely elusive. In another such emergency event even ten years later, much of what data exchange would occur would still involve the manual re-entry of results or efforts to reconcile incompatible emailed spreadsheets.

These types of manual exchange and reconciliation efforts are very problematic in an emergency event. During Anthrax manual processes were also prominent in surveying lab capacity (which lab can do the next 100 tests?) and perhaps most importantly in the accessioning of lab specimens and possible cases of disease. Accessioning issues seem to now be almost completely forgotten but, at that time, the CDC, state health departments and the LRN struggled to try to connect results from different labs to the same specimen. Public health has seemingly always struggled to connect lab results to the possible cases of disease being managed by epidemiologists. These problems of electronically connecting laboratory and epidemiologic data persist today because of the ongoing lack of processable data exchange and the politics of data ownership and patient identifiers.

Disease Surveillance
Not long after Anthrax, a lot of attention switched to academic interest in using health IT to try to first detect a bioterrorism event or naturally occurring outbreak before it was identified by a human clinician. This was the focus of much of the so-called “syndromic surveillance” work. At the CDC and elsewhere, there was healthy skepticism that IT systems would soon beat out astute clinicians as the initial detectors of an event. Instead, an effort was made to try to focus attention on the “situational awareness” needs in “biosurveillance”. Every emergency had huge needs for as much information as possible related to what type of problem was involved, how big the problem was, and where it was occurring – situational awareness. And in each emergency it was clear how these capabilities needed to be built before, not during, the emergency event.

The requirements of situational awareness are very different from those from those of trying to identify an event before anyone knows about it. In the Anthrax attacks, for example, it would have been very difficult to use emergency room visits for skin lesions as the initial detector of an event - there was too much noise in the data. Once it was known that Anthrax was involved, however, it would have been extremely helpful, as well as technically easier, to get a sense for where, how many, and at what rate such visits were occurring because aspects of what you are looking for in the huge data sets is then known. It is still not clear that these differences are well understood or completely attended to in today’s surveillance systems.

Outbreak Management
Also lost in the “initial detection” craze, was managing possible cases of disease, linking confirming lab results with each possible case, linking environmental exposures, and supporting “contact tracing” to determine who else may have been exposed. These are much more practical public health functions. The “linkages” between these data are critical to the management of an event, but require processable information and frequently involve inter-organizational and inter-jurisdictional data sharing. Some of these capabilities have improved, but it has been all too easy to put aside the challenging politics of these functions.

Certainly with the major investment in EHRs in hospitals and practices, it would be better to focus on more specific and actionable outbreak “case reporting” that can be leveraged from the coded problem lists and summary records specified in Meaningful Use, rather than “symptom bins” of free text chief complaint data. Outbreak case reporting is also more supportive of routine local and state public health needs in addition to emergency events.

Response Management
Perhaps the most neglected aspect of health IT emergency preparedness and response is the management of the pills, vaccines and isolation that can actually impact subsequent exposure and disease spread. These needs were clear in the latter flu vaccine shortage, but also existed during Anthrax and almost every other emergency event as well. Getting the right supplies to the right places and tracking their administration is frequently forgotten because there is less of it in a highly contagious disease like H1N1 and because it is sometimes dismissed as just “counting pills”.

Communications
One area that has advanced significantly since 9/11 is the explosion of electronic communications. There is little doubt that public communication channels like the Web, Twitter, Facebook, etc. can reach more people with more information more quickly now. These tools are principally for public information, however, and don’t address more sensitive or complex health information exchange that is referenced above.

A Multi-Use Connected Health System

As we look back and remember the events that occurred after 9/11, we should remember that while clinicians using EHRs can definitely help, by themselves they will not address the broader requirements of these events. These emergencies demanded a broad, multi-organizational electronic health system. Optimistically we may find that such a system can help address the new focus on continuity of care, “medical homes” and electronic quality reporting pretty well, too.